Hi everyone, This is my very long RSD Story - I need to update it but thought I would post it. I am thinking about putting my story into a book to try and help raise awareness about RSD.

My RSD Journey.

It’s hard to believe that just over a year ago I was a normal 12 year old: I went to school, had good grades, went shopping, had fun and did all of the usual things that a normal 12 year old would do.

Then on the 20th March 2007 all of this changed when I fell down some steps outside my moms work and sprained my left ankle. My ankle was painful but both me and my mom thought that it was just a normal ankle sprain and that it would be better within a few days – we couldn’t have been more wrong!!

Over the next few days instead of getting better my ankle gradually got worse and the slightest touch had me crying in pain. Knowing that something wasn’t quite right, my mom took me to ER, where they X-Rayed my ankle, told me that I hadn’t fractured any bones and that I should rest, elevate and ice my ankle over the next few days.

I didn’t think things could get any worse but they did, so my mom took me back to ER for a second opinion. Once again we were told that there was nothing to worry about, but that I may benefit from some Physical Therapy. This visit was to be my first of many experiences of the lack of belief and mistrust, some health professionals have in RSD patients.

Not only was I told that I needed some Physical Therapy, but that I should get my act together, stop dwelling on the pain and if I did that my ankle would get better.

By the time I had my Physical Therapy assessment the following week, my foot had begun to rotate out from the ankle and the slightest touch to the area round the ankle bone caused me excruciating pain. I was told that I had probably torn a ligament, given crutches to help me to bear less weight through the ankle until the tear had fully healed.

The following week I went on vacation with my parents to Spain and managed to increase my walking distance although the pain never went away. Unfortunately on the last night someone knocked into my ankle and I spent the rest of the night crying and in agony.

Over the next month I had twice weekly Physical Therapy but despite this the rotation in my ankle became fixed, the area of pain increased and walking became more difficult.

Eventually it was decided that something had to be done to stop the rotation so the PT's contacted ER to ask them to arrange for my leg to be placed into a cast to try and correct the rotation.

Even though the cast was supposed to remain in place for 2 weeks I had to have it removed after 4 days, my ankle and my foot were trying to rotate within the cast and I was unable to do anything because of the pain.

Until this time I had somehow being able to go to school in between hospital appointments but over the next few weeks I often had to come home due to the pain or couldn’t make it to school in the first place.

As the cast had being unsuccessful an MRI scan was ordered but I was told that I may have to wait 3 months for this to be done, so I was referred back to Physical Therapy. It was this time that the PT's first mentioned that I may be at risk of developing RSD. From what I understand now there is no such thing as being at risk of developing RSD and that I actually already had it and already had done from the very point in time when the injury had occurred.

I had regular Hydrotherapy sessions without success and despite the junior Physical Therapist still questioning RSD she was over ruled by her senior who believed that I was making up the whole thing because I was having problems either at home or at school.

The very last Hydrotherapy session I had consisted of 2 PT's cornering me in the pool and proceeding to attempt to prove that I was making the whole thing up and asking me to admit that I was lying about the whole thing.

Knowing that the MRI scan was still weeks away my mom asked for a second opinion and we were referred to one of the Orthopaedic Doctors.

At first he too believed that there was some psychological reason as to why all of this was happening. Fortunately a couple of nights previously my mom had noticed a slight spasm in the muscles in my lower leg so she asked the doctor to check it out.

It was almost as though a light had gone on, he suddenly realised there was something physically wrong and mentioned that there may be some nerve damage. As he had never seen this before he needed his boss to check it out.

The following week we were back again to see his boss, who despite telling him that the spasms, pain and deformity were in my ankle, he examined my hip instead almost dislocating it in the process, suggested placing me on a waiting list to have a full leg cast put on for around 6 weeks and also suggested that I may benefit from seeing a Pain Management Doctor. Whilst I was on the waiting list it was also suggested that I see my own GP whole would prescribe me some pain medications.

My GP took one look at my foot, picked up the phone, spoke to the Orthopaedic team and demanded that they saw me the same day and began running some tests to find out what he was actually prescribing the medications for.

An hour later I was back in ER and tests were being run. The doctor there couldn’t believe I had not being admitted previously and immediately sought to secure me a bed.

Unfortunately for me, he also asked the duty Physical Therapist to take a look at my foot. Once again I was told there was no reason why I needed an admission and that PT was the best way forward in my case.

I felt at the time that I was a hamster on a wheel, going round in circles but never getting anywhere. Despite the best efforts of the doctors, the PT's were once again calling the shots!!

By now I had been in pain for 3 and a half months, my walking was slow, my ankle was permanently rotated and I hadn’t been able to attend school for a number of weeks.

My mom called the pain team at our local children’s hospital but was told that it may be another 3 months before they could see me.

On June 30th I went to visit my grandma. The effort of walking the 20 metres to her house left me physically and emotionally shattered so instead of going home my mom drove me to the ER nearest her house.

The doctor’s took one look at me and ordered X-Rays. When they came back clear they admitted me for further tests as they sensed something was very wrong. As scary as this was, I was relieved that finally someone was taking my pain seriously, but I was also sceptical that I wouldn’t get any closer to knowing what was wrong.

A couple of days later the Senior Orthopaedic Consultant came to ask us if we would attend his team meeting where a discussion of my case would take place.

I found myself in a room with around 10-15 doctors who discussed my case with me and my mom, and carried out a full physical assessment.

They told me that they suspected I had RSD but none of them had ever seen a case before, so they had made arrangements for me to be transferred to our local Children’s Hospital.

Less than 4 hours later on the 3rd July I was seen by the Pain Management Consultant at the Children’s Hospital, the very person I would have to wait 3 months to see.

The PM consultant discussed my history, arranged an MRI scan which ruled out any other problems and diagnosed me with RSD (Reflex Sympathetic Dystrophy). Finally I knew what was wrong, and although he could make no promises as to how long my path to recovery would take, or how many twists and turns there would be along the way, I had someone who believed my pain was real and there was a reason for the rotation in my ankle.

The following day, 4th July, he arranged to do a bier block which could possibly reduce my pain for the first time in months.

Looking back now it is ironic that Independence Day 2007 would be a defining moment in my battle to regain my independence. I like to call 4th July “Loss of Independence Day”. For some reason the nerve block didn’t have the desired effect and instead of reducing my pain the block caused me to develop balance and coordination problems, leaving me in a wheelchair.

The hospital had never seen this before and believed it may be a temporary complication which would wear off once the drugs began to leave my system.

I was allowed to go home for the weekend and it was then that the reality of the situation hit me. I couldn’t walk, couldn’t climb the stairs to the bathroom or bed and had to rely on my mom taking me everywhere.

When I went back to hospital on Monday morning, the consultant was amazed that the problems persisted and referred me to the Physical Therapists and Psychologist’s attached to his team and prescribed new medications.

I had never had a good relationship with Physical Therapist's in the past and the new ones would prove no different.

The PT's believed that because they had never seen RSD present with movement disorders before they didn’t believe they were linked directly to my RSD. I remember one of the first comments made by my Physical Therapist was “It’s not that you can’t walk, it’s that you don’t want to!”

Can you imagine how upsetting it is to be told that you can control your legs, when despite your best efforts your RSD leg shoots out in front of you throwing you off your balance and onto the floor?

At the same time, the spasms in my leg, which were previously like a heartbeat or pulse around my ankle changed to become a violent twitching and jerking of my big toe, which happened at regular intervals throughout the day. Already self-conscious about being in a wheelchair, people would now stop and stare at my toe and I became more withdrawn and isolated as a result.

During July and August PT made no impact on my balance and coordination and any attempts at desensitisation were impossible as no amount of medication would begin to take the pain away enough to make touching my leg bearable.

Finally the consultant began to wonder if the Gabapentin prescribed at the time of the block was causing the new complications and arranged to change me over onto Amitriptyline.

Yet again my body reacted to the new drug, my pupils became fixed and dilated and I was unable to focus. I wanted to remain as independent as possible and despite pleas from my mom to let her help me I attempted to get myself out of the bath tub. I reached for the side of the bath to lift myself out and before I realised that I hadn’t gripped anything due to my inability to focus, I had slipped, my arm went underneath me and I fell with the whole of my weight landing on top of my arm.

Within a matter of hours my arm was bruised, swollen and had begun to close into a fist.

As it was the weekend I went to my local ER and as luck would have it the consultant who first suspected RSD was there.

He immediately believed this was linked to the original injury and wrote to my PM consultant asking him to assess my new injury.

A few days later I received the news that I was dreading, - my RSD had spread to my right arm.

In an attempt to reverse the effects of the fall I was taken off the Amitriptyline and put on Lyrica, and booked in for further Physical Therapy, this time concentrating on my arm.

Yet again, the trust I had in PT’s was brought into question when despite the PM consultant insisting I had RSD in my arm, the PT overruled this stating that the way my hand had become locked into a fist was a protective mechanism and not linked to RSD at all.

Three months later, and despite weekly Physical Therapy, I was suffering complications due to my finger nails growing and digging into my palm, so it was suggested that I was taken to the Operating Room where my hand would be cleaned, the nails cut and a splint would be used to attempt to keep the hand open.

In the Operating Room the splint was made and moulded to the shape of my hand. I was given morphine as the doctor knew that my hand would attempt to re-close and return into a fist.

By the time I was returned to the ward it became apparent that splinting may not be the answer as the ends of my fingers had began to curl up inside the confines of the splint.

By the following morning my hand had somehow managed to reform a fist and I was in a lot of pain as the morphine was ineffective.

The splint was removed and I was discharged later the same day whilst the staff at the hospital rethought their options.

During the month following the spread to my arm, my leg was sort of forgotten with all efforts being concentrated on trying to reverse the most recent injury.

My walking was still extremely unstable and my mom was having to support me along with crutches to prevent me from falling. I had also developed severe swelling in my leg and was readmitted to hospital as the doctors needed to be sure my circulation was not affected and there was no underlying conditions other than my RSD.

Using crutches wasn’t easy with my hand forming a first but we did notice that if I applied downward pressure I could somehow open my thumb enough to get a loose grip on the handles. This gave me an idea that I could begin to work on things at home.

I started by forcing a thick marker pen into the gap between my thumb at first and trying to write. We also got a new puppy and I used to stroke him with my RSD hand.

We watched in amazement as each day my fist began to uncurl a little bit more until a week later, although curled into a loose fist, I could open my fingers when needed and grip a normal pen and write. Finally something seemed to be going my way and I began to believe I could regain control of my body despite being unable to control the pain I was in. By now I hadn’t been to school for six months and I agreed to try and return on a part time basis.

Unfortunately the layout of the school meant wheelchair access was difficult and I had to transfer outside the building if I needed the toilet and work in the library as I couldn’t gain access to many of my classrooms.

The physical effort of getting ready and travelling to school would increase my pain to the point that it was almost impossible for me to concentrate on my studies.

Eventually I was offered home tuition but it would take another two months to organise.

Just before Christmas my mom had to go and do some shopping for presents for the family and as the bad weather was increasing my pain levels I agreed to stay at home.

I spent some of the time on my laptop and then decided to get back onto my bed and rest. I somehow managed to bang my arm on the corner of the desk during transfer to the bed and by the time my mom returned home around 30 minutes later the whole of my lower arm had swollen to twice it’s normal size and my hand was trying to close back into a fist.

The last thing I wanted was to lose my grip again so despite the pain I began to work through some of the exercises I had done previously and managed to keep my hand open throughout this most recent flare.

I wasn’t due Physical Therapy and had no doctors appointments booked due to the Christmas break so my mom emailed a photo of my hand through to the doctor’s office.

We received a call by return and were asked to come to the hospital the following day.

The doctor, PT's and nurse examined my arm and my PM consultant confirmed another flare of the RSD in my arm. I distinctly remember the look on my PT’s face when I explained that she had told me I had never had RSD in my arm, it was just my body’s way of protecting me after an injury due to the fear of my RSD spreading.

My doctor told her this was a clear cut case of RSD and there was no way I was either consciously or subconsciously controlling the way in which my arm was reacting.

It was also explained to me that my nerves were so “wound up” at the moment that if a slight knock could cause such a reaction in my arm, then it was equally possibly that the nerve block all those months earlier could have caused a reaction resulting in my loss of balance and coordination.

Despite agreeing with the diagnosis, we felt that it was now time to seek a second opinion, particularly with a view to treatment options, and my PM consultant agreed to look into where else we could go in the UK that would have seen the sort of dystonic RSD I was experiencing.

The problem was in the UK that although RSD is predominantly an adult illness our medical system directed that given my age I had to be treated at a children’s hospital. Eventually it was decided that I be transferred onto Great Ormond Street Hospital in London, the leading children’s facility in the country.

Whilst waiting for an appointment to go there my medications were increased and I continued to have regular Physical Therapy sessions. My relationship with the PT’s had never been good and this wasn’t about to change now. I found that they often made remarks which were never quantified, the latest one being “If your house was on fire and you were upstairs alone, do you think you could get out unaided?” The realisation that I probably couldn’t upset me to the point at which I became extremely agitated and although the intention of the statement had been to ensure I was safe and secure in my home, the fact that no one had ever explained this and the PT’s seemed to persist in their belief that I was somehow responsible for the situation I found myself in was unbearable.

I already had had terrible experiences with PT’s over the past year and nothing was about to change any time soon, though my mom demanded that any remarks made in future be explained fully as they could often be misinterpreted.

Before I went to London another, seemingly small problem arose, I developed an ingrown toenail on the big toe of my RSD foot. As the toe was now spasming almost constantly, and due to the pain and hypersensitivity in my foot and lower leg it was agreed that it would be removed in the Operating Room whilst I was asleep in early April.

Whilst waiting for this procedure, I made the journey to London to see my new PM consultant who confirmed the diagnosis of RSD with the added complications of Dystonia and movement disorders and suggested that I may benefit from a full assessment with a view to being offered a place on their rehabilitation program. As I was aware of the success of the program within the United States I began to feel more optimistic about the future.

On 2nd April I returned to hospital for the operation to remove my ingrown toenail.

It was agreed that I would stay in hospital overnight and be connected to a PCP (Patient Controlled Analgesic) to try and control any increase in pain following the procedure.

When I came round in recovery I noticed I was keeping the staff amused as the minute I regained consciousness my big toe began spasming continually and more violently than before. My PM consultant came to see me in recovery and said he thought things would settle back into the cycle of intermittent spasms within a few hours – how wrong could he be.

Overnight the PCP did nothing to decrease my pain and the ring block in my toe was wearing off making things even more painful. Around mid morning we noticed my whole leg starting to shake ever so slightly and within an hour it was thrashing around wildly for one minute out of every three.

My PM consultant tried Diazepam to stem the shaking but again this proved ineffective though he still suspected the shaking would resolve itself. It was agreed that I be discharged and return the following day for the dressings changing.

When I returned the following day it took 2 nurses and my mom to hold me leg in an attempt to redress the toe. My PMC stood watching in amazement and admitted he had never seen RSD presenting like this before.

Over the next few weeks a number of attempts were made to control the movements in my leg with drugs but despite this and despite the fact that the toe was almost fully healed the shaking persisted.

Walking was becoming even more problematic. I already needed the help of my mom and my crutches but now I had the added complication of timing transfers so they did not coincide with the shaking which could potentially throw me onto the floor.

I returned to Great Ormond Street Hospital for my PT assessment in May. The lead practitioner there explained that although she had seen over 100 cases of children with RSD mine was only the second case she had seen with these types of movement disorders and I also had the added complication of the Dystonia as well.

Even though it sounded as if the odds were stacked against me she explained that she had manage to regain varying levels of function and mobility in all but a few very small number of the children she had treated and that if I was willing to put 101% into the rehabilitation program she was hopeful that it would prove to be a turning point in my battle against RSD. By this point I was ready to try anything, however difficult, to regain control over my leg in the same way I had recovered from the two flares in my arm. Despite being told that it would be the hardest thing I would ever do I was actually looking forward to it and hoping the eight weeks before I started the program would pass quickly.

Great Ormond Street Hospital spoke to the PT's at my local hospital about my RSD and the way in with it should be handled and the change in attitude was amazing.

Where I had always been reassured that they had seen several people with my particular complications, the staff now admitted that this was not the case and that basically as they had never seen movement disorders to this degree they had no way of knowing how to treat them.

With support from GOSH they began targeting exercises which would be reinforced during my stay in London and were aimed at reintroducing weight bearing in an attempt to control the spasms.

Despite knowing that my best chance of remission lay with the rehabilitation program I was also reffered to a neurologist who would assess the movement disorders and look at treatment options should the rehabilitation program not prove to be as successful as it was hoped.

A year to the day since I last walked I went to see a Neurologist about my movement disorders.

I didn’t remember him but it turned out he was involved in the initial diagnosis and was surprised to see how much worse things were than in July last year.

He and my Pain Management Doctor are currently involved in writing a paper and conducting a study into movement disorders in children with RSD.

Although the numbers studied are small, it is hoped that the paper will be well received as it is one of the first to specialise in childhood RSD with the complications I suffer from.

Whilst the nine other cases studied happened up to 15 years ago and long term follow ups have not been made, they have asked that my case being the worse movement disorders they have seen to date will form the basis to take this study further and allow regular analysis of treatment and the progression of the illness over a long term period.

Although the study only followed patients for a maximum of 3 years after diagnosis it is apparent that early diagnosis is essential if a successful outcome is to be achieved.

A reduction in tremors has been seen in half of those seen so far but very few have had a full resolution of the problem.

I was advised that Physical Therapy would be the best treatment option as it has no side effects and I do not tolerate medications very well.

If the PT results in a partial reduction in the tremors and Dystonia my Neurologist will then prescribe medications which will hopefully stem the spasms even more and hopefully bring on my best chance of remission.

Hopefully the Physical Therapy program will lead to a full remission and my story will bring hope to others.